Met with my oncologist today. The results of my last PSA test came in – a little over 50. Bad news. At this point I’m likely to start a on a new drug, either Zytiga or Xtandi. First, I go off Casodex, and we see if I’m in the 20% of men whose PSA drops (for unknown reasons) after coming off Casodex. If so, we’ll wait until it rises again.

Note there’s nothing magic about 50. The accepted standard of care is that Lupron/Casodex are in failure after the PSA rises for three straight months. By that measure, I have already entered failure. My treatment plan has been different from the norm, because I’ve had so much trouble with depression.

Due to side effects, I’m leaning towards the Xtandi when the time comes.

I’m not sure what I thought I’d feel like when I reached this point. Maybe relief, because I no longer had to deal with the anticipation. Instead I feel mostly nothing. It seems like just another step on the path to death. I don’t mean that in a morose way. Death seems more and more like a natural part of life to me.

Met with the oncologist today. My PSA was up about 10% into the mid 30s. He told me that means the Lupron is slowly failing, which is good. He wants to keep me on Lupron (and Casodex) until the month to month jumps hit 20% or my PSA exceeds 50.

At that time we’ll add Zytiga to the regimen and drop the casodex. I thought that I’d be done with Lupron, but that’s not the case. I’ll still get Lupron every month.

I’m a little concerned about going off the casodex, since I feel it was a major factor in controlling the depression. He thinks I just got used to the Lupron. At any rate, if the depression returns, I’ll propose we add casodex back to the mix and see what happens.

I also asked about travel next year, specifically in about seven months. He said there shouldn’t be any problems making the trip, good news!

I’ve started to come to terms with my death likely in under two years. The panic attacks are largely gone and the anxiety is much ore manageable. Interestingly enough, the anxiety and panic is almost always the worst right before I go to sleep. I think I just don’t want the day to end and to officially one day closer to death, but who knows.

Just got back from the oncologist. I got mixed/negative news. My PSA is up slightly from before. If it’s up three times in a row, it’s an indicator that the hormone treatment is failing. When that happens, on average, survival times are less than two years.

In the lead up to this meeting I was a mess. My scanxiety was thru the roof starting back around June 11, when I got the last injection. I had no appetite and lost 5 pounds (not all bad). My energy levels were ridiculously low. The muscles in my back pulsed into and out of spasm. Going to sleep was hard to come by. I made frequent use of xanax and gin and tonics. The oncologist thinks a lot of this is due to the lupron and casodex and how they affect me. I’m off both of them for two weeks starting today and we revisit their use later. I meet with my GP later this week to try to get control of the anxiety and a better handle on what’s causing my lack of energy (he thinks it might be related to my heart attack).

A lot has happened in the last three months. I was anxiously awaiting the results of my last PSA test about 6 weeks ago. Prior to that, my PSA had dropped from 50 to 9 to 5. I was hoping for a 2 or maybe even less than 1. I got a 15. Triple my last score. My first thought was that the Lupron has failed, followed closely by absolute fear. My oncologist told me that this outcome didn’t necessarily mean the hormone treatment had failed, because I wasn’t on the hormone treatment as recommended. Up to now I’ve been taking Lupron every other month, due to the depressions it caused me. The last few months, as an experiment, I’ve taken Casodex, another hormone therapy drug, along with the Lupron. That introduced three side effects. The depressions nearly went away, my hot flashes grew much more frequent and severe, and I developed occasionally significant breast tenderness. The depression remediation was a big win, and with it we decided to switch me to a normal hormone therapy regimen – where I’m on it all the time. My oncologist suggested I start taking Black Cohosh herbs in a capsule for the hot flashes. They’re over the counter and even mention on the bottle that they help alleviate hot flashes. They’ve worked out very nicely for me. Instead of 2-4 severe hot flashes a day, I get a moderate hot flash every 3-4 days. On the breast tenderness front, we have to wait and see. He acknowledged this could turn into a serious problem, but so far it’s manageable.

As I was settling in to this new regime, on June 1 I participated in an Advanced Prostate Cancer Virtual Blogger Summit sponsored by Bayer HealthCare (they were even nice enough to provide a webcam for me). In general I learned that men do a poor job recognizing and communicating the signs and symptoms of advanced prostate cancer. For me personally, I realized I’ve been minimizing the problems I’m having with fatigue and anxiety. Over 85% of men with advanced prostate cancer have fatigue issues, so at least I’m in good company.

I sleep 10-12 hours a day and often need to spend a few minutes recovering from taking a shower. On the anxiety front, I routinely find the muscles in my legs, buttocks, and back totally tense up and are hard to move. Some of that may be all the chemicals I’m taking. It’s hard to figure out what’s causing what.

On June 11 I got my next month’s injection of Lupron, as per the typical regimen. What that really meant to me is that on July 14 I would find out if the Lupron has failed.

My anxiety has been through the roof since then. Many nights I’ve had to take anti-anxiety pills to get to sleep. The muscle “lockups” have been more frequent. I’ve had a few bouts of depression, but have been able to fight them off. I have a ready supply of anti-anxiety pills, but I try to use them only when really needed. My docs tell me folks build a tolerance to them; and I don’t want to use that up unless it’s absolutely necessary. Last night I didn’t need them, and I’m going to try going to sleep without them tonight.

Despite all this bad news, my life isn’t that bad. Fifty percent or more of the time I feel pretty good. I’m hoping that once I get resolution on Lupron’s status the anxiety will go down, even if the result is it’s failed. Now if I can just get my legs to relax and go to sleep…

It’s been quite some time since my last post, my apologies. I received mixed news over the last month or so and I reacted to the negative side of the news by not wanting to talk or think about my cancer. What I found out was that a major contributor to my lack of depressions was being on Adderall at the same time. While this might sound like at least neutral news, it isn’t. People usually develop a tolerance to Adderall in a few months, when used for depression, and the effect is already starting to wear off for me. So more depression is on the program, which is depressing in and of itself.

There was good news. My PSA, measured from cycle to cycle has gone from 50 to 9 to 5. The Lupron and Casodex are still clearly working. I continue to be nervous about how long this will last, though. They typically fail 2 years after treatment is started, and I’m at 2.5 years now, more or less. The anxiety before I go in for my PSA test results every other month is near crippling. When the drugs fail, it means I have 2 years left, on average. There is precedent for the drugs lasting much longer in rare cases. My oncologist has a patient who’s been on Casodex alone for 9 years. I’m hoping for a break like that.

For the most part I’m doing OK. The majority of my depressions are mild. I’m still traveling and having fun with my wife and friends. But it feels surreal that all will end fairly abruptly, although that can happen to anyone at any time. It’s just that near certainty that my life will end decades before my actuarial time to die that pushes me to focus on my mortality. We’re all dying by definition, but I really feel as if I’m dying now. Maybe you have to have a terminal illness to understand the difference, but it’s real and it’s scary. In the meantime I just try to stay as upbeat as I can and cope with the depressions as they come.

For the most part, it sucked, sucked out loud. Over two month periods throughout the year, I’d have 2-4 weeks of episodic depressions that started with no warning and for no reason. Some were mild, but many were debilitating.

Since there was no reason, other than chemical, for a depression to start I had no idea when it would end, or even if it would end. Usually, the last couple of weeks of the two month period were relatively depression free – just enough time for me to start dreading the next Lupron shot and the depressions that would follow. I never felt I had enough time to fully recover from the depressions before the next set arrived.

There were only two breaks to this pattern. One occurred in the middle of the year for no discernible reason. The depressions were mild to non-existent. It appears to have been a random event. The second occurred during the last month and a half of 2014 when I started taking Lupron and casodex together. All the depressions ended for the month I was on them. This last three weeks, being off both, has seen no depression flare ups either (although I have had started experiencing pronounced hot flashes 2-3 times a day).

I’m not sure if this latest break from the depression will hold up going forward or just be another random experience. I’ll find out soon enough. At the end of the week, I get my next injection of Lupron and go back on casodex. I want to believe the depression free experience will hold, but I’m afraid of being disappointed if it doesn’t. Several times during 2014 I almost stopped taking Lupron because of the depressions, even though that would have meant my life would be significantly shortened. The hopelessness was almost unbearable.

These last seven weeks have been a wonderful respite, I just hope they continue on.

I met with the oncologist last Thursday. My PSA dropped from 50 to 3.1! This is at the end of the one month Lupron and casodex treatment. I go off both now for 4 weeks and we see what happens. The best part of this news is there’s no question the Lupron and casodex are working.

There’s also another element to report. It appears that adding casodex to the Lupron pretty much removes Lupron’s depressive side effects. I hope this holds up on the next cycle.

(I would have posted this earlier, but I had to replace my router after a power outage in the neighborhood fried it.)